Hypothesis The viral origin of myalgic encephalomyelitis/chronic fatigue syndrome, 2023, Maureen R. Hanson

[Sean]

@EndME

Thanks.

Not everyone can do CPET though.

Certainly not suggesting it is appropriate for regular clinical use.

But a far earlier use of it for basic research could have saved us a lot of trouble, regardless of what it finds.

 

[Solstice]

I really hope that it's some obscure immune dysfunction causing the illness (which GWAS might help find), because if it's really just a chronic infection we could have found 40 years ago by looking at tissue, I don't think I would be able to cope losing my entire life because of that.

I think whatever it's gonna be it's gonna be maddening. I just hope it's something they can easily fix in the here and now so we can have our life back asap.

 

[Dolphin]

“#Chronicfatiguesyndrome may have a post-viral infection origin”

Summary of recent @DrMaureenHanson paper urging an inquiry into what she considers the prime candidate for previously existing ME/CFS cases, enteroviruses.

https://medicalxpress.com/news/2023-09-chronic-fatigue-syndrome-post-viral-infection.html

https://twitter.com/user/status/1699909586386350179

 

[Jaybee00]

https://twitter.com/user/status/1702699337380512100

 

[Jaybee00]

Maureen Hanson sounding more and more like the Twitter folks who claim that they are the only ones with true ME because they were infected by Enterovirus Strain 619 in the Boysenberry Patch Outbreak of 1979. I don’t see this as being helpful.

 

[sneyz]

Maureen Hanson sounding more and more like the Twitter folks who claim that they are the only ones with true ME because they were infected by Enterovirus Strain 619 in the Boysenberry Patch Outbreak of 1979. I don’t see this as being helpful.

Isn’t it wise to keep Long Covid as a variable until further though? At last there’s an opportunity to acquire large datasets with lab confirmed positive tests from within a limited timeframe. The alternative is the possibility of further muddling the same old ME/CFS pool of data.
Also, the political/marketing side of things: Long Covid has brought a lot of attention, ditching it for ME/CFS would probably not be a strategic win. It may well be wishful thinking, but I do trust she has good intentions.

 

[Jaybee00]

The issue is that MECFS is diagnosed based on symptoms— if you meet the diagnostic criteria then you have MECFS. MECFS is agnostic as to the trigger.

If all of the folks with what we believe is Covid triggered MECFS had completely refreshing sleep or if none had cognitive impairment then that might be something different.

Getting funding for MECFS research is difficult enough—how much more difficult will it be if we fund each trigger organism/event separately?

 

[Mij]

I had refreshing sleep w/o cognitive impairment the first 11 years of M.E. from a sudden viral onset. The type of virus I got was insignificant , the virus attacked my thyroid.

An M.E specialist with 25 yrs experience dx me with 'atypical M.E" in 1992. Over the years I eventually developed PEM.